As featured in the June 2017 Edition of Fibromyalgia UK Magazine
I’d been waiting what felt like a lifetime to find out what was wrong. I’d been poked, and prodded by numerous professionals, had to explain my symptoms what felt like a thousand times, and each time the doctor thought they had cracked it. Then results came back negative and they were just as stumped as before, what was wrong with me? After going through this cycle a number of times, I finally reached a diagnosis of Fibromyalgia, then what?
I went to my diagnosis appointment, like all of my appointments, alone. I went hopeful of an answer, so that I could begin to get better, to take action to battle against the pain and fatigue, yet when I got that answer, I didn’t reach the climax of relief I thought I would. Instead, I was scared, lonely, and confused. It was like somebody had pulled the plug on my future, my career, and my whole being, I felt like I had been sentenced for a crime I didn’t commit. Being on my own made my head go into a complete spin, and I’m not even sure how I got home. What I do know is that when I did the hopelessness flooded out of me like a tidal wave and I was in more pain and more fatigued than ever. The diagnosis rollercoaster was about to begin.
I spent the first part of the ride figuring out what to do. The process I followed could be likened to grief, I even doubted that the doctors had got the diagnosis right at all, which is a classic denial symptom. I longed for the person I used to be, I felt like I had lost all my identity, and that I would never regain it. Anger and denial came hand in hand for me.
I had already discussed with my rheumatology consultant my wish to treat the fibromyalgia as naturally as possible, I’m not somebody who likes to take paracetamol, let alone any serious medications. I had agreed that I wouldn’t rule out taking medication, but for now I wanted to start gently and work my way up, working holistically with my body, and seeing how I got on. Was this too much to ask? When I said this it became quite clear that this was a path that I was going to have to pursue on my own, after all, holistic naturopathic care is not something the NHS currently, nor in the near future will provide. I asked if there was anything at all that could be done and made suggestions on how they could help me, knowing full well the answer would be no as the services simply aren’t available. I bargained hard but bargained with the wrong people. A few days later I even emailed my rhuematologist with some suggestions for further tests to rule out other possible conditions that had a more robust treatment plan, desperation and bargaining at its worst.
I felt that I had to be proactive. I had to use the pain and the desperate need to not be defined by the Fibromyalgia to my benefit. The first thing I did was to do A LOT of research into exactly what fibromyalgia is believed to be, and the evidence that can be used to base my treatment on. Was the research reliable, and had other people, those with Fibromyalgia symptoms similar to mine found benefit? The information available was overwhelming, I spent far too much time doing this and it made me focus negatively on my diagnosis, which was not the best, both physically and emotionally, I was drained. I enter a depressive state, I felt like I would never get better, that nobody could help me and feared that I would lose my job.
Then I began speaking to others who live with fibromyalgia about their symptoms on social media sites and forums and soon realised that while no one fibromyalgia warrior is the same, we do all have one goal – an urge to get better and to live our lives to the fullest extent possible. This will look different for each one of us, but on the whole we all have the same aim in mind. To do this we all need different treatment regimes, some with minimal medical support and some with very heavy medical support. There is no treatment plan that fits everybody and so to find out what works for you, you need to try a number of techniques, one at a time and find out which ones work and which don’t.
This was the point where I accepted my diagnosis and I began to feel more positive and hopeful. I need to stress that this cycle of grief, denial, anger, bargaining and depression, took place over an incredibly intense period of time that only lasted about 2 weeks, but was tiring. However, it takes time for the heart to accept what the mind already knows.
As I accepted my diagnosis, I started to become honest with people that I knew about my diagnosis, not to gain sympathy, but so that they could begin to understand why I wasn’t quite my old self. When you share, news very quickly spreads, like a wildfire actually, but while some may perceive this to be gossip, I found it very useful. Why? Many people, as a result of hearing my news, shared their own stories with me, or knew somebody with fibromyalgia that I could speak to, living with the beast that could relate to me. There were also a number of people, who upon hearing my news would offer up their skills and expertise, or those of a relative or friend, to help me on my journey. This is the point when I no longer felt alone and the positivity flowed throughout me, I finally felt that maybe, one day, I would be a new sort of ‘well’. Optimism was now a word in my vocabulary again, which was difficult to find in the wake of a fresh diagnosis, when things were scary, uncertain and I lacked control. Without the support of my peers I would never have reached this point.
So here I am today, flitting somewhere between buoyancy on some days and frustration on others, and thats ok. People will tell you to be positive, upbeat, and that everything happens for a reason, but that doesn’t mean that you have to be excessively happy. For me part of having a chronic illness is learning to deal with the rollercoaster of emotions that comes with it, riding the waves if you will. Along with simply going through the motions, part of accepting a chronic illness is being able to articulate just how terrible somedays are to family and friends, without the fear of judgement. Being falsely happy all of the time, for me, is actually somewhere close to denial of the beast that lives inside you, and while you remain in denial there is no way of moving on. My loved ones now know that while on the whole, most days, I can be positive and bright, there are the occasional days when I just need the fibromyalgia to be acknowledged and take a step back to get myself back on track. What is important is that I don’t allow myself to wallow in a cycle of negativity, by being mindful and acknowledging my symptoms but then being hopeful that this shall pass and a good day will come again.
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